New Worried Twitcher

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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New Worried Twitcher

Postby Scboy on January 16th, 2014, 7:11 pm

This is my first post as I came across this site looking for info on my condition. Lots of good info on this site.
I began twitching on Dec 16 and have twitched all over my body since. The twitches seem to be mostly in my legs but really they can pop up anywhere. This is so weird cause I have never experienced anything like this before. I had a clean EMG 2 weeks ago. Not sure what that really means, cause I hear lots of conflicting info about EMG, but the doctor says unlikely to be ALS and mentioned BFS. He did EMG on left arm, hand, leg and foot. The neuro exam (strengths, reflex) was good also. Even though the Dr said unlikely ALS I still get nervous because these twitches just want go away and I swear sometimes it feels constant in my calves. Also my legs at times feel heavy and hypersensitive to touch like spasticity. I jog a mile every day and I have been getting a stabbing pain in my thigh not excruciating but a little annoying. I've been running for sometime and never had this pain before. My twitches seem to die down immediately after I run but they eventually start up again after I relax a while. Also my thumb pad on my left hand has ripples like possibly some atrophy. Anyway I am all new to this and I am nervous wreck. Wish there was a 100% reliable test for ALS the uncertainty painful.
Any advice would be helpful.

Thanks,
Frank
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Re: New Worried Twitcher

Postby Gamindsoc1509 on January 16th, 2014, 9:40 pm

A neurologist isn't going to miss atrophy or spasticity.

Also, what makes you think that sensitive to touch = spasticity???

ALS doesn't consist of sensory issues.

You're basically in the clear bud. If you want to be super conservative, get a re-check at 6 or 8 month mark but no point stressing after that. (In saying that however to create some perspective, you'd have more reason to worry about cancer in this time frame).
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Re: New Worried Twitcher

Postby donnastar on January 16th, 2014, 9:51 pm

Hey Frank welcome to the forum. Totally hear you about the annoying symptoms. I too like to jog as it helps me de-stress and I get into a zone of relaxation. Since all my BFS symptoms started I find the same thing post running, they calm down but then hours later or the next day they go crazy especially in the arches of my feet. Sometimes I wonder if it is worth the run but while running it reminds me no true weakness. My advice would be trust your doctor, continue to jog and find ways to ignore the twitches - my trick for my feet is to wear socks when their acting up. Then I'm not tempted to look at them, sounds silly but a small thing that has made a difference for me. I'm no expert but many great posts on this forum which has helped me through some darker times- you've found the right place.
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Re: New Worried Twitcher

Postby veryworried123 on January 16th, 2014, 10:14 pm

If you've had a Nero and normal emg your good
I don't see anything concerning in your comments

What you need to do is reduce stress and anxiety. That is key

Read bfs in a nutshell and if needed why I don't have a%^ and then re-read them again and again
Refer back to them

It's a summary of years and years of work by both senior members here and key professionals
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Re: New Worried Twitcher

Postby Scboy on January 17th, 2014, 4:03 pm

Thanks for the replies. Nice to communicate with other people who have walked the walk.
Other details I left out are my age-44- and the fact I was on Zoloft for about 3 months this fall. Tapered off in late Nov/early Dec. side effects were too much for me. Often wonder if the Zoloft has anything to do with this even though I was only on 25 mg for 3 months. Dr said he hasn't seen any data on ssri and BFS but he didn't deny it as a possibility.
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Re: New Worried Twitcher

Postby veryworried123 on January 17th, 2014, 8:19 pm

Stop looking for a reason on why
Many have tried

Your time is better worth spent on de-stressing and reducing anxitey

You twitch and we all twitch hundreds an thousands of times per day
It's not going to hurt you

As my family dr said "are you dumb? Your twitching and honestly nobody cares just stop caring let it twitch"
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Re: New Worried Twitcher

Postby RGB on January 17th, 2014, 8:24 pm

I've been there (see below) and it isn't pleasant. All I would add is that when doctors say 'unlikely' we hear something more like 'could still be' and that isn't what they mean. They mean they can't exclude it 100% but that's only because there isn't a definitive test, for all practical purposes though you don't have ALS (just like everyone else here doesnt have it).
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: New Worried Twitcher

Postby Scboy on January 20th, 2014, 8:54 pm

Thanks for the replies. I am trying my best to chill. Another symptom that has cropped up are stabbing pains in my thighs and shins. Nothing really excruciating but annoying for sure. Is this something BFS related? I've never have this before.
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Re: New Worried Twitcher

Postby johnnythejet on January 20th, 2014, 11:46 pm

Feel free to overanalyze the pains and feelings of heaviness and hypersensitivity, but immediately stop all thoughts of ALS possibility. Your story matches thousands from this community, none of which panned out to be ALS. That is not by coincidence, but simply reflects the laws of nature. Its not ALS, and I'd gladly wager every cent on that fact.
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Re: New Worried Twitcher

Postby Yuliasir on January 21st, 2014, 12:11 am

On my own experience stabbing pain in thighs are definitely sign of exhausting due to anxiety (had them alot when was young and taking part in a brand new plant startup). I was hitting myself in my tighs becasue I had that type of pains every half an hour and my boss was really amused: "what do you do, girl?" "I have stabbing pains here and there" - "Oh God you are just so much tired my dear"... He was right. I was tired and frightened becasue of new job, need to speak English extensively, and becasue I am GAD and can be frightened by anything, even by the slight shadow of anything, and I got responsibilities new unknown to me etc.

Zoloft can cause twitches. I was for 6 month on Rexetine, similar active substance, and I had my twitches dramatically increased. By the way in some leaflets myoclonia (a kind of twitches) is stated as a side effect of SSRI, however my doctor was denying that but another one psychiatrist agreed and confirmed. I decide that I will still stay on SSRI as prescribed becasue of my GAD flareup which I need to break, and in about 4 weeks after proper winding off my twitches become virtually zero.
Your twitches just would not go away becasuee doctor said you are fine, much as your flu would not go away after you say 'I have a flu", but you need still 3-5 days to kill the virus and get back to normal functions. In BFS it may take 3-5 months ;) or years :)
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Re: New Worried Twitcher

Postby Scboy on January 21st, 2014, 4:39 pm

I'm an engineer so analyzing abnormalities for root cause and creating solutions/improvements is kind of the way my brain works. It makes me good at my job, but does me no good with BFS. In fact it is counter productive. Just too many variables and unknowns. But the good thing is that there is lots of historical data. I have pretty much have gotten a grip that this is not als cause the probabilities based on my symptoms are very very low for als. Although when this first starts up it is scary cause twitching feels unnatural and is a reminder that something isn't working exactly the way it's supposed to, even if it is benign. I like to exercise so I will have to work through the annoying symptoms, but it could be a lot worse. This whole experience is allowing me to take a step back and evaluate my life so some good is coming from this experience.
Thanks for the words of encouragement for everyone. I'm sure I'll continue to analyze this whole BFS thing cause that's who I am, but I am determined not let it get to me any more. It's already ruined my Christmas. Luckily I didn't ruin it for my 7 year old daughter and 10 year old son.
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Re: New Worried Twitcher

Postby Yuliasir on January 22nd, 2014, 12:38 am

SCboy,
practically usaslly BFs is a way your body choose to say that you are overloaded. It might be a job, an infection (expecially neglected one due to urgent job), it might be a grief, a fear or vice versa seemingly joyful event like marriage or maternity :)
So you may put your analytical thought to those factors and see if you got too much of something of that recently - too much of stress.
Many of fellows here had a history of anxiety or obsessive disorders which makes BFS quite obvious part of the mood disorder manifestation, but if you are lucky and do not belong to that part of population, then definitely you might experience significant and/or prolonged stress before that all started.

Usually getting on more or less tight schedule in terms of sleep, light sports etc is extremely helpful.
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Re: New Worried Twitcher

Postby Scboy on January 22nd, 2014, 10:05 pm

What is meant by exercise intolerance? I get stabbing / burning pains in my thighs and calves after i run just 1 mile. Is this normal with BFS? Is this what they call exercise intolerance? Sorry just new to all this. Only have had this sympton for a few days.
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BFS Knowlegdable Neurologist in the Southeast.

Postby Scboy on January 24th, 2014, 8:39 am

Wondering if anyone knows of a good neurologist in the Southeastwith with knowledge of BFS. A little disappointed in my last neuro visit. When I told him of my stabbing pains in my legs after running he said that he didn't think that was part of BFS. He proceeded to order an MRI which I'm ok with but I get the feeling that doesn't have a lot of experience with BFS. A little frustrated.
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Re: New Worried Twitcher

Postby leaflea on January 24th, 2014, 11:27 am

Where in the southeast? what is your closest large city? Find a large neurology clinic or teaching university with a medical school and ask for an appointment with their resident specialist for Motor Neuron Disease or the neuro with the most experience in it. Many of them specialize in more common things such as headaches, stroke, Parkinson's, or muscular dystrophy, or MS. Find someone who does not specialize in one of these or is at least more of a generalist.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New Worried Twitcher

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